I started out on Requip. It kept me terribly nauseated. I also became even more OCD. NOT fun.

After suffering with that for about a year I switched to Stalevo. That was only a bit less bad than Requip. It also added some nasty mood swings to my behavior. LESS fun.

I wasn't exactly batting 100.

Compared to those, Sinemet was my miracle drug. Unfortunately about 2 months ago it suddenly stopped working very well. I recognized it as a neuronal state change. It really felt like it, too. (That's techie talk. Sorry. )

I'm working my way up to the 6 mg dose with the new skin patch. Next week I should know if it's of real help. I'm currently at the 4 mg level. It is offering some benefit but we'll see if it proves out.

With DBS the best I hope for is that my "off" time will approach my "on" time symptoms. Nothing more. At least the surgery is reversible (Yeah, with more surgery.)

At least I'll get to joke about having even more holes in my head.

The worst I expect with the DBS is:

1) infection
2) stroke
3) death

Other than that it should be fine!

Steve

neuronal change is a good description, not to be presumptuous but i also experience fairly abrupt declines where sinemet doesn't work as well, i guess adding neurotransmitters only helps when there are working neurons in the right places.

haven't researched DBS that much, assumed there was a chance where it would make quite a difference.

For me, with two Parkin mutations, I find rigidity is my worse symptom. My meds wear off almost instantly. My first symptom is brain fog followed by Brandykenisia over my whole body, then a tightning of my diaphram to the point of forcing myself to breath. I am having alot of cognitive difficulties. Memory, multitasking, walking into a room to look for something, not finding it, then get distracted by a messy drawer and making that my project. In the meantime, if I was cooking the meal is destroyed.


Dianna

For those who experience any feelings of weakness, does shifting your weight help? When I feel my upper body is more connected when lying down on my back if I shift my wright to my elbows a few tumes, my arms and hands kick on. Walking is still a crap shoot. This does not happen daily, but when it does...I curse everything in sight

Laura

The weakness I describe is a feeling of extreme exhaustion in my legs. It is the exact same feeling I use to get after I had jogged 2 miles.

My arms don't feel weak unless I try to do something that requires that I use fine motor skills with my hands. I can lift a weight but I can't hold a spoon hardly at all. I can use a fork to stab at stuff.

By the way, my wife and I just watched the DBS advertising DVD together. That was like watching a recruiting film for a military suicide mission. They didn't soften the inherent risks at all.

When I asked her if I might benefit from it she agreed that I might. Then when I asked her how she felt about it she said it scares her.

I'm lucky in that I've always been able to remain detached from my feelings until everything is over and done. I really feel ambivalent about it. As usual, I'll be astonishingly brave about it then cry like a little girl when it's all over.

I'm almost positive that I'll go ahead with it. Besides, it'll make for a great topic.



Steve

I had mine in 2006. Wasn't scared then and would do it again. The neurosurgeon only had done a few at that time. It is a risk, but it helps YOPD persons better than anything else out there. The biggest drawback is if you wait too long it will not pull you up any more than how you feel now on your meds. Another drawback is you will no longer be able to have MRI scans or DAT scans should you wish to know your progression.

I fought like a Tiger to get it as soon as possible so the effects would be more noticeable and slow down the progression of my disease.

Dianna

Thank you, Dianna. I shared what you said with my family. I think it helped a lot.

Steve

A couple of days ago, and unplanned, I found myself at the end of a 17km walk, having been off my Parkinson's drugs for almost 2 days,

The good news: throughout the hike my walking was excellent, at least as good as the three healthy people in the group.

The bad new: my arm control got progressively worse; by the end I found it almost impossible to make any adjustment to my clothing.

On getting back I took 75mg levodopa (as part of a Stalevo pill). It took about 30 minutes to have an impact, and after a hour I was as good as I ever get.

14 hours later, without taking any other drugs I was still better than I started.

This wasn't a planned experiment, but I collected some tap test scores (left hand 30 seconds + right hand 30 seconds).

Hours since meds, Tap score, Comment
35, 28.90, 6 hours before walk start
46, 22.25, finish walk
1, 57.03, I took 75mg levodopa after finishing
13, 34.68, no more drugs.

This experience raises a number of questions:

How do you explain the upper/lower split within the context of IPD? It is easy to see how a left/right split could occur, but an upper/lower split is harder to explain. Were it not for the profound response to levodopa I would expect some other diagnosis.

Given the short half-life of levodopa this must be almost clear from my system before the start, so what keeps me going? I take ropinirole XL which would still be in my system even at the end of the walk. Also the levodopa is converted to dopamine which is stored in vesicles in the remaining dopaminergic neurons.

What explains the far larger than usual response (area under curve) of the 75mg levodopa at the end?

Does anyone know of any research into these types of questions?

It seems to me that an understanding of the interaction between drug dose, missed doses and exercise would help PwP to optimize their medication.

John

Neck and shoulders give me the worst problems (stiffness and pain) both of which can be stretched out and functional after a good work-out before leaving my bed. Hope to be able to make a video so I can pass on my stretches to you all...which are what keep me going daily. Right foot only gives me trouble when very low on l-dopa. Not being able to find harmony is stressful when playing music when low on l-dopa also (a mental symptom ...when you can no longer connect with the music) a little tincture and I am back playing or singing again. My friends no longer stare or question when I get out my dropper-bottle.